Updated: Apr 29, 2022
How it feels when it really happens...
For Gwendolyn and our family we believe, as with her siblings, she can have it all. Each would grow by being out from under the security of the parental umbrella and Gwendolyn is no different.
We set aside the date and vision of exactly what independence would look and feel like for Gwendolyn for another day.
This past Tuesday, that day came!
After years of dreaming, preparation, hard work, we helped settle Gwendolyn into her new home - a fabulous residential living community. It has everything for her including life skills classes, exercise, nutrition, her favorites including cooking, art, Zumba, jewelry making, basketball, swimming, and even horseback riding. They offer lots of social activities and opportunities to work on campus too. She will live in a dorm with a roommate and 26 other adults of various disabilities. She will have independence within a secure and supportive framework - what our definition of independence evolved to over the years.
She has been excited for months since her waiting list number got called. And to be honest, my wife and I have been giddy too over the prospect of being empty nesters!
But on this actual date, I sat on her new bed holding her, tears welling up inside me as I choked out the words, "I love you. I'm so proud of you." And after a few moments of recovery, "I will miss you."
Butcher Block Plans
Four years ago Gwendolyn declared her pursuit of independence. We stood around the countertop in the kitchen with a big sheet of butcher block paper and mind-mapped what independence would mean:
Personal Hygiene and pride
Work and responsibility
Chores and family
Safety and security
School and learning
Decision making and independence
We talked about each category and that the journey would be long, but that if Gwendolyn truly wanted independence, we would be there to guide her and there was no reason she couldn't achieve her dreams.
We talked a bit about what independence might mean because it can be defined differently for each person and family. Perhaps more responsibility at home, more decision-making, inclusion in the community, or moving out of the family home. Time would tell.
A Tough Goodbye
I admit, as the time for us to leave drew near, I did wonder, "What the hell are we doing?" But I immediately took solace that this has been her dream, the community and especially the staff here have been fabulous, and after nearly 27 years at home with us, it is time for her to move to her next adventure. She has certainly plateaued during COVID and needs new challenges to keep her learning and growing, and this is it!
After we took a few more pictures, we gave our last hugs and kisses. Gwendolyn has always been quite empathetic if not emotional herself. So I wasn't surprised when my eyes welled up again, she squeezed me tight. I said, "It is okay to be sad sometimes but you will love it here. You've made it!"
She responded, "I'm not sad. I'm so happy. You can go!"
I chuckled and we headed out.
Jennifer and I decided to sell our home and move to be closer to Gwendolyn once she got a space in this community, so we can be there for her and she can be there for us. Once we buy a house, we will be less than 30 minutes away, an easy drive to stop by for a visit, pick her up for dinner, or take her home for a weekend. Yet the shift from permanent housemate is more significant than I had expected and is further complicated by a six-week no-visit policy so she can develop comfort and support within her new community.
Still, Jennifer and I walked silently to the car carrying only two empty suitcases. We slid into the front seats...and cried. I think they were collective tears of finality after such a long journey, certainly of the anticipation of missing her routines in the house, her pet names for us, and her endless inquiries about dinner plans and if we are okay.
A few days earlier I lay on her bed as she was enveloped by the TikTok stories on her phone while she lay on the floor. I watched her face but all I could see was the newborn whose cord I clipped and then held in my arms, the baby who would sit in front of the mirror making faces amazed at the transparency of it all, or the toddler I'd spin around on swings and play cars in the driveway, or the teen who discovered love...and kissing, and then the independent 25-year-old beaming after her first day of work and when she walked home all by herself. That girl, that young lady, was not truly independent and on her own.
And just like that, Jennifer and I became the newest empty nesters and were freaking out!
We soon reminded ourselves of Gwendolyn's great successes, the fabulous community she was now a part of, and the admirable job we'd done as parents.
We hugged each other, smiled, and drove away in silence.
We've Facetimed or talked to Gwendolyn every day this first week. She is settling in well and enjoying her classes. She seems a bit confused when we redirect her requests for different foods or why pill time is different to her local staff but she will get it. Change is difficult for us all, but always pays dividends in the end.
We are indeed proud of her and of us. It is a difficult journey for Gwendolyn and perhaps even more difficult for us and for other families who likely never fathomed moving their adult with Down syndrome out from under their roof. But the growth, pride, and confidence we are surely going to see as Gwendolyn blossoms further will make it all worthwhile.
The UPLifting Guidebook Project is gathering information from parents, doctors, living facilities, and individuals with Down syndrome so we can help in your journey.
Please take our quick and confidential survey. Your answers will help us better understand your dreams of independence and the obstacles that may stand in the way so that we can seek to address the myriad of issues in our upcoming Guidebook for Independence. Click on our logo below to take the quick survey.
Look for updates on The UPLifting Guidebook Project on our website.